Sunday, October 26, 2014

Recently Ed complimented me in a way that totally surprised
me by telling me how brave he thinks I am. At first, I thought he was teasing
me, as he often likes to do, but he sincerely assured me that he was completely
serious. Because I see myself as quite cowardly, this comment took me off
guard. I think of myself as the little kindergarten girl who for a month clutched
a map my mom had made of the route between home and school, terrified that I
would get lost. Driving on highways makes me terribly nervous, and the thought
of driving out of town makes me sick to my stomach. Before any new situation, I
repeatedly mentally rehearse what I will say and do, for fear of making a fool
of myself. If he thinks I’m brave, I must put on a good façade.

This week, we had to take Alex for a physical examination to
gain medical clearance for his upcoming oral surgery to remove his twelve-year
molars and wisdom teeth under general anesthesia. Because his regular family
doctor is now only available limited hours, I decided to take him to another
doctor. After rehearsing this scenario in my mind several times, we took Alex
to the new physician on Friday. We were quite impressed with the doctor, her
staff, and her office, and we were pleased we didn’t have to wait long. However,
Alex decided he was not happy to be there and made his displeasure known.
First, he waved “the claw,” his right wrist bent at a ninety-degree angle and
waved up and down in a dismissive gesture while making a face as though he’d
been sucking lemons. Then he decided to stomp his foot on the step of the
examination table to get our attention as the doctor and I went over his
medical history. Realizing we were ignoring his hand waving and foot stomping,
he escalated to swinging his hands and feet. He would not be ignored.

Thankfully, Ed was there to handle Alex, who was acting more
like a two-year-old than a twenty-two-year-old, distracting him and trying to
keep him calm so that I could convey information to the doctor. Finally, as
Alex became more agitated, I apologized to the kind and understanding doctor
and asked her to give us about five minutes alone to settle down Alex. Once she
left the room, Ed and I went into teamwork mode, with Ed cajoling and coaxing
while I instructed him to use the calm down skills he has learned in therapy.
With his requested reward of going to Pet Supplies Plus hanging in the balance
and a few minutes of reassurance that we were almost done, Alex pulled himself
together and was able to complete the physical exam without further incident.
However, we knew that we had another step ahead of us before he could receive
medical clearance: tests.

Knowing that Alex is much more pleasant in the evening, we
decided to take him for his tests after he’d eaten dinner and had his beloved
nightly bath. Fortunately, the lab where we needed to take him has evening
hours, so we knew this was probably the best scenario to get the testing done.
On Friday evening, we discovered that Alex was the only patient, which was
ideal because he didn’t have to wait. As usual, he handled the blood draw
beautifully, never even flinching and watching in fascination as his blood was
drawn into test tubes. The friendly lab technician even commented that he was
“a perfect patient.” After that, he needed to have an EKG and chest x-rays,
something he had never done before. Uncertain as to how he would do with having
to be very still, we were a little nervous about how long these tests could
take. However, the x-ray technician was wonderful with him and able to get him
to cooperate fully so that the tests went very smoothly. Moreover, Alex
apparently had a great time and found the tests interesting. Not only were we
pleased with the outstanding and efficient staff at the lab, but we were also
delighted that Alex had been so pleasant and cooperative. After dealing with
Mr. Hyde at the doctor’s appointment, we were thankful to take Dr. Jekyll to
the lab.

Even though we weren’t happy with Alex’s behavior at the
doctor and were a little apprehensive about how he would react to the tests, we
weren’t afraid. I think we have been through enough difficult situations with
him to know that somehow we pull together and pull through to get things done.
Ed and I each know our roles in those circumstances: he handles Alex while I
handle the paperwork and medical staff, each of us playing to our strengths.
Most of all, we support each other so that we can help Alex be healthy, happy,
and safe. Part of this fearlessness comes from the faith we have learned in the
tough times; we know that God has always seen us through every situation. In
fact, one of the things I like best about the facility where we took Alex for
the doctor’s appointment and lab tests is that because of its affiliation with
the Catholic church, the abundance of Bibles and religious symbols reminded us
of God’s presence.

Moreover, as I watched Ed calmly interacting with Alex,
especially when Alex was agitated, I realized that his fearlessness has
inspired me to be brave. Whether it’s because he grew up in New York City or
because he has a few years of life experience on me or because he just doesn’t
naturally fret the way I do, I can attribute any bravery I have to what I’ve
learned from living with Ed. Today we celebrate Ed’s birthday, and every day I
thank God that he is Alex’s dad. I’m sure our life is not what he imagined when
he thought of what fatherhood would be like, but being an autism dad has made
him rise to the occasion, to be braver and stronger and more patient and more
compassionate. Because of his quiet strength and unconditional love, Alex and I
are blessed, and the three of us make quite a team, pressing forward
fearlessly, ready for the next adventure.

“So do not fear, for I am with you; do not be dismayed, for
I am your God. I will strengthen you and help you; I will uphold you with my
righteous right hand.” Isaiah 41:10

Sunday, October 19, 2014

This week, the media reported some intriguing research that
offers a potential new treatment for autism. As I have mentioned in previous
blog entries, I follow autism research closely, hoping to find something that
will help and possibly cure Alex. While these new methods of treating autism
don’t always turn out to have the potential initially promised, I keep
searching for the one that will, indeed, heal Alex. Whenever research from
credible sources appears, I find myself especially missing Alex’s childhood
doctor who passed away a few years ago. Whenever I would share research and ask
her opinion, we would enthusiastically discuss the possibilities, and she would
share her medical training to help me fully understand the biochemical mechanisms.
Most often, she would finally proclaim, “Well, it’s worth a try because it’s
certainly not going to hurt him.”

This new research, published this month in the journal
Proceedings of the National Academy of Sciences, suggests a somewhat surprising
source of hope: broccoli. More specifically, a chemical found in broccoli
sprouts known as sulforaphane may help improve conditions often associated with
autism. The authors of the study, Dr. Paul Talalay, professor of pharmacology
and molecular science at The Johns Hopkins University, and Dr. Andrew
Zimmerman, professor of pediatric neurology at University of Massachusetts
Medical Center, studied forty males with autism aged 13-27 for 18 weeks. Some
were given pills containing sulforaphane, while others were given a placebo. [To
read more about this research, please click here.]

Most of those who were given sulforaphane showed
improvements in behavior, such as less irritability, fewer repetitive
movements, and fewer problems with communication and motivation. These positive
changes were evident to the families, friends, and medical staff, as parents
described their sons as “calmer and more socially interactive.” The staff
described them as, “much or very much improved,” and researchers noted their
improved eye contact and willingness to shake hands, which were not evident
when the study began. As Dr. Zimmerman stated, “This is by no means a ‘cure,’
but sulforaphane may ameliorate symptoms of autism.” Unfortunately, one third
of the males did not show improvement, and even those who had shown improvement
lost those gains when they stopped taking sulforaphane. In the placebo group,
only 9% showed improvement in behavior, and none showed any improvement in
their social and communication skills.

Why might this chemical found in broccoli help those with
autism? Dr. Talalay explains, “We believe that this may be preliminary evidence
for the first treatment for autism that improves symptoms by apparently
correcting the underlying cellular problems.” Research has shown that people
with autism often have biochemical abnormalities in their cells, such as
oxidative stress, which can lead to inflammation and DNA damage. Sulforaphane
may help improve the body’s own defense against oxidative stress, decreasing
problems caused by inflammation. Another theory is that sulforaphane helps
strengthen the “heat-shock response” that protects cells during high
temperatures, triggering the same response in cells that fever does. Many
parents of children with autism report that their children improve when they
run fevers, and we have seen this phenomenon in Alex the few times he has run
fevers. Essentially, this chemical found in broccoli may treat the cellular problems
found in autism, eventually improving the symptoms of autism. Of course, since
autism probably has various causes, some with autism will likely not respond to
this treatment, as evidenced by those in the study who did not show
improvements. As the researchers note, further studies need to be done.

The authors of the study caution that simply eating broccoli
is not enough to bring positive changes. They note that the amount of
sulforaphane can vary in different types of broccoli, and the ability to obtain
this chemical from the vegetable can also vary, depending upon the person’s
ability to digest it properly. In addition, this chemical is sensitive to heat;
therefore, cooking can lessen its potency. Therefore, the best way to obtain
sulforaphane is through supplements, and the amounts must be adjusted to the
patient’s weight. Specifically, in their study, 9-27 milligrams per day were given.

Quite excited about this research, I wished that I could
have discussed it with Alex’s former doctor. I decided to order a
sulforaphane supplement to try with him since it was inexpensive and probably
wouldn’t hurt him. However, I also decided to do more research on this
supplement before actually giving it to him. One possible side effect of this
antioxidant and anti-inflammatory compound is that it may affect how quickly
the liver breaks down some medications. Because Alex is on a variety of
medications, I need to make sure that taking the supplement will not increase
or decrease the effectiveness of his medications. Also, another study showed
that sulforaphane has the potential to be a blood thinner because it may
prevent blood platelets from clumping together. Since Alex is having oral
surgery to remove his wisdom teeth in a few weeks, I don’t want to risk his
having any bleeding complications from the surgery. Consequently, even though I’m
anxious to see how he may respond to sulforaphane, I have decided to wait a
little while to try it with him. However, if and when the time is right, I will
be praying that this simple solution may be an answer to prayers, a hope for
the cure we and many other parents of children with autism have sought for so
long.

“I have given them to you for food, just as I have given you
grain and vegetables.” Genesis 9:3

Sunday, October 12, 2014

This week, People
magazine’s fortieth anniversary issue included a feature entitled “Advice to My
Younger Self” in which they asked celebrities “what life lessons they wish they
had known when they were just starting out.” As I read the responses, I found
some to be rather superficial, perhaps offered in jest, wishing they’d
reconsidered hairstyles or wearing sunscreen. Others seemed to focus upon
ignoring hurtful criticism, and some insisted that they wouldn’t try to give
their younger selves advice. A few showed good insight into life and what they
had learned from experience, such as actress Jennifer Aniston, who was quoted
as saying, “I would just say, ‘You’re doing exactly what you’re supposed to be
doing. Just keep doing it. It gets better.’” Looking back on my experience as
an autism mom, I think I would agree with her advice. I would also share a few
more lessons that I have learned to save my younger self some worry, and maybe
they could help other parents new to this journey with autism, as well.

Lose the guilt.
After Alex was diagnosed with autism, I worried that somehow I was to blame.
Was it something I did when I was pregnant with him? Was it something I didn’t
do? Even though I followed my doctors’ advice to the letter during my high-risk
pregnancy and have always lived a clean life, I blamed myself. To atone for my
self-perceived sins, I threw myself wholeheartedly in trying to find ways to
make him better. When progress was slow, I felt guilty that I was somehow doing
something wrong. Over the years, I’ve realized that shouldering needless blame
is tiring and pointless. God doesn’t want me to feel guilty, and I need to stop
feeling as though things that go wrong are my fault.

“Stop assuming my guilt, for I have done no wrong.” Job 6:29

Be patient. One
of my flaws is that I have little patience for waiting. However, raising a child
with autism has made me learn patience because so many skills take longer to
master than they do with typical children. At times, I thought Alex would never
sleep through the night, would never use the toilet independently, would never
be able to have a conversation, and many other things I wrote off as impossible
for him. Over time, he conquered the obstacles on his timetable and on his
terms. Now, whenever I become impatient waiting for him to learn new tasks, I
must remember his past accomplishments and know that God is not finished with
him or, for that matter, with me.

“Patient endurance is what you need now, so that you will
continue to do God’s will. Then you will receive all that He has promised.”
Hebrews 10:36

Change is good.
Although I’m a person who prefers to exist in a comfortable rut, I have learned
that the changes I dread often turn out to be for our good in the long run.
Over the years, we have had various professionals who work with Alex come and
go, and I have mourned the loss of these people. Even though they were
wonderful, God has sent us others to replace them who meet our current needs
instead of our former ones. As some of these people who had been so important
in our lives have moved away, seemingly closing doors, others moved into our
lives and brought new approaches Alex needed. For example, I felt great
disappointment when Alex’s beloved energetic behavioral therapist took another
job. However, her sweet and mellow replacement was exactly what he needed. He
has made great progress with her, and we adore her—she is a gift from God.

“For I am about to do something new. See, I have already
begun! Do you not see it?” Isaiah 43:19

Choose faith over
fear. One of the greatest lessons I have learned over the years is to have
faith that things will work out in the end. That faith has come with testing
because I tend to fret over everything. However, through experience I have
found that many of the things I have worried about never came to pass, and we
survived the trying times that did arise by depending upon our faith. Fear
paralyzes; faith energizes. When we didn’t know what to do to help Alex, prayer
strengthened us and gave us the peace and wisdom we needed to make decisions. While
I still struggle with trying not to worry, my faith has grown, and I try to remember
to pray before I panic.

“They do not fear bad news; they confidently trust the Lord
to care for them.” Psalm 112:7

Look forward. While
I worry about what the future holds for Alex, especially when Ed and I aren’t
around to take care of him, I know that I need to trust God to take care of
him. Moreover, I can look back on the progress he has made and continue to hope
that he will eventually overcome all of the obstacles autism has presented.
When I become frustrated that his progress seems to be moving more slowly than
I’d like or even that he seems to be taking steps backward, I remember that this
is only a temporary setback. We keep pressing forward, knowing that he will get
better. This hope sustains me when I feel disappointed, frustrated or worried
because I look forward to the day when we can look back and celebrate just how
far we’ve come, knowing that God was with us every step of the way.

“Yet I am confident I will see the Lord’s goodness while I
am here in the land of the living.” Psalm 27:13

Sunday, October 5, 2014

Over the years, people have suggested that having a pet dog
might be good for Alex. While I’m sure they mean well, they really don’t know
how much care Alex actually requires. Having the responsibilities of a pet in addition
to taking care of Alex every day seems daunting to me. For example, Alex takes
various pills four times a day, and having to remember to give a dog a
heartworm pill monthly would be an additional task I'd prefer not to have. After
spending years toilet training Alex and cleaning up his accidents on the
carpets, I would dread having to housebreak a dog. Furthermore, I’d rather not
have to clean carpets after puppy accidents. After dealing with Alex’s sleep
difficulties over the years, I now enjoy sleeping peacefully through the night
and wouldn’t appreciate being awakened by a pet needing to go out or wanting
attention.

Nonetheless, at times, I have idealized notions of a boy and
his dog and wonder if having a dog might be beneficial for Alex. After all, one
of his favorite places to go is Pet Supplies Plus, where he carefully studies
all the different dog foods and is especially fascinated by the bags weighing
more than thirty pounds. At these times when my heart wants to rule my head,
ever-practical Ed reminds me that Alex never watches where he walks, and he would
likely be stepping in dog doo every day. The thought of cleaning the bottom of
Alex’s shoes and any places he has walked is always enough to remind me we
don’t really need a dog.

This week an unusual situation occurred that gave me a
chance to see how Alex would interact with a dog. When his music therapist
arrived at our house for his weekly session on Thursday, a cute little dog
followed him from his car to our front door. Although I didn’t recognize the
dog, it wanted to come in the house with him and cried when we left her
outside. Since she wasn’t wearing a collar or tag, we couldn’t identify her
owner. Feeling sorry for this scared little pup, I decided to put her on our
back screen porch and try to find where she belonged. Any time I left for a
moment, she would whimper, so I told Alex to stay with her and talk to her.
Half-heartedly, he talked to her, but he had no real interest in her, even when
I assured him that she was a nice dog. Fortunately, through a neighborhood
online group, we were able to return her within a couple of hours to her very
relieved and happy owner.

This experience once again showed me that getting a dog for
Alex would not be a good idea. If he didn’t respond to this adorable,
well-behaved dog, he would not be likely to warm up to any dog. Moreover, I
wouldn’t want to take the risk of getting a dog that would not be as nice
as our temporary visitor. Alex wouldn’t be willing or able to take on the
responsibilities of feeding, walking, and grooming a dog by himself, and I’m
not eager to take on those tasks myself. While I had thought that my motives
for not wanting a dog were somewhat selfish, I realized that Alex really has no
interest in having a pet, so there is no point to getting him one.

Essentially, Alex only wants to relate to those who can do
something for him. If we could find a dog that would prepare food for him,
drive him to Pet Supplies Plus, put Epsom salts in his bath, and find the
belongings he has misplaced, he might be more enthusiastic about having a dog.
In the meantime, doing all those things for Alex keeps me busy enough that I
don’t need a pet that requires my care, as well. Now, if we could find that
magical dog that could serve as Alex’s chef, chauffeur, valet, and concierge, I
could be persuaded to reconsider. In the meantime, we’ll just enjoy other
people’s dogs for short periods of time and continue to browse Pet Supplies
Plus without ever buying anything.

“With My great strength and powerful arm, I made the earth
and all its people and every animal. I can give these things of Mine to anyone
I choose.” Jeremiah 27:5

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.